Adenomyosis

Just wondering if any of you girls have Adenomyosis (Endometriosis Interna)?
I have just been diagnosed.
Have been doing some research and it appears there is no real treatment, unlike endo, due to the location. Am not really sure what to think right now. Is all very confusing, and i feel so alone as noone (IRL) seems to understand what i am going through!
Would love to hear from others and read your stories...

HI Cooper, I am sorry that no one has replied earlier. I asked this question a little while ago and feel alone with it too. Mine is not formally diagnosed, just a thought when I got my lap for my endo...

Do you have children already? I have one little boy and I was told it may be caused by trauma from my last birth (and it was a very hard labour and birth).

it has been over 2 years now since we have been TTC for number 2. It is a horrible thought that maybe this is the reason, and I would like to know more about it myself, as it is confusing to me why we cannot concieve when everything else is fine. I have made (with hubby of course) 7 lovely embryos through IVF but none of them implanted over the 6 months we tried. I just got my period today.

we are now on our own for 3 monts for an overseas trip and to try 'on our own' just like our little boy was made without any problems like this..............it is so hard to see him growing up without a sibling, but I do realise I am luckly to have him..........but somehow it is still very hard.

I hope others will post and hear their stories and experiences, the very best of luck to you, I do know what it feels like Cooper and thanks for posting.

Hi Cooper,

Yep, I have got it too, very badly I'm told.

I was diagnosed with severe endometriosis in 2004 - it destroyed one of my tubes, so we went on IVF and were lucky enough to conceive my daughter, she was born May 2006. When my period returned it brought terrible pain, which I thought was strange, because mostly endo is supposed to get better after pregnancy, not worse.

So my OB arranged a laparoscopy to see what was going on, and he found that I now have very bad adenomyosis. Apparently this type of endo gets WORSE during pregnancy, because your uterus is stretched by the baby growing and the endo can actually get into the muscle tissue. According to him my uterus is the size of a 10 - 12 week pregnant woman because of the adenomyosis :(.

So, we are now back on IVF, hoping for another baby before things get worse. My OB has told me the only cure for my situation, and to stop the horrific pain, is a complete hysterectomy. I really badly want another baby first though, so I hope it all works out OK before that happens!

I hope it all works out for you too - are you trying for a family at all?

Best Wishes,

Vicki

hi Vicki,
I got different information and my Gyno is a leading expert on endo and doing research currently on Adenomyosis. I was told that adeno cannot be dianogised correctly by a lap because as you say the damage is IN the muscle tissue - so cannot be seen. He has speculated this may be the case with me, and like you my uterus is slightly enlarged, however, this can be the case with many women who have had babies previously.

I wish I could stop your pain, life is NOT fair sometimes. I do not get any pain whatsoever, however I used to have it fairly badly BEFORE I had my first child natually.

I just wish we could also get clear answers from 'experts'.

Thanks, Runnermum,

I just want another baby, the rest of it doesn't matter so much to me. My FS says my chances have been reduced somewhat because of the adeno, but hopefully that won't stop us. I had an ovum pick up yesterday and am getting (all being well) an embryo transfer tomorrow afternoon.

I hope you also find success in conceiving number 2. People tell me that I should be grateful for my gorgeous daughter, and I am, more than anything, but it is my dream for her to grow up with a sibling.

(By the way, I noticed on another forum that your FS is Jim Tsaltas at MIVF - he is mine too and gave me the diagnosis of my adeno! He is lovely and helped us conceive our beautiful daughter! Hopefully he can pull off the same trick again this time!)

Fingers crossed for us all :pray:,

Vicki

Hi Vicki,
I agree with you, all I want is another bub for my son also, don't really care how it happens, but hopefully sonner than later. Isn't that interesting to get two different opionions from the same FS.... He is a lovely man just wish we could all see him more often - this is what I find frustrating as he is so busy and to get an appointment takes soooooooo long.

The very, very best to you. How old is your daughter?

She has just turned 18 months. It's such a gorgeous age, she is so curious and learning things so quickly, it is a fascinating time!!!

Thank you girls, is nice to know i am not alone!
I do not yet have children, so you girls are very lucky!
I am having a mirena inserted in a fortnight, as my gynae thinks this may help with some of my symptoms etc...will see how we go...hopefully things improve as i am becoming depressed due to my hormones being all over the place and the pain and constant bleeding etc, it is having a big effect on my relationship too :(

I so know how you feel, Cooper. I was in pain around 75% of the time too. My period would go for a week, then I would have even worse stabbing pain for a couple of weeks after, I was popping pain killers like lollies. Then I'd have a week or so off before it all started over again.

It was all starting to wear me down. It made me seriously tetchy and I found it hard to look after my daughter (I am a stay at home Mum) properly when I was in so much pain myself.

My FS gave me the pamphlett on Mirena too, but he is still leaning towards a full hysterectomy to solve my issues. For the last few months, I have been on the drug Synarel, which brings on temporary menopause and stops your period. Oh the blessed relief!!! You can't be on it too long though, because it affects your bone density apparently.

I've now started IVF to try to conceive another baby before it all gets too much. I'm in the two week wait right now to see if I'm pregnant. Finding out I'm not, if that is the case, will not be as bad as having to have another period though, now I'm off the Synarel - I'm totally not looking forward to that!

I hope the Mirena helps you overcome your pain!!

Thank you so much Brownbug!
I have just been bleeding for 3 out of the last 4 weeks...am so exhausted all the time...cant be bothered doing anything...just want to cry constantly! My partner has just about had enough too (particularly from the sex point of view) and i just feel so lost...
If Mirena doesn't work i will look in to something like synarel...as i am not having a hysterectomy!!

Good luck with the TWW too...fingers crossed for you...

Thanks so much. I'm not a patient person, so the waiting is worse than everything else put together!

The hysterectomy is certainly a very drastic option, I agree. It freaks me out a little just thinking about it, as I feel like I'm too young still for that (probably a silly preconception of mine!!)

If I am lucky enough to have another bub, I will then probably, like you, try the Mirena first and see if that helps.

Again, all the best with it. Noone should have to live in pain all the time - we have much better things to be doing! ;)

Hi girls,

I too, have adeno (found out 12months ago). Dh and I would love a sibling for our DD just over 2yrs old. We've been told that my biological clock is literally ticking (im only 32) and if we wanted to ttc#2 then we had to "get on with it now". That being said, we are now into our 2nd year of trying. FS has given us until the end of Jan to keep trying. I've also been told that due to the state of my uterus and the adeno, and based upon the slim chance that I can actually carry #2 to full term because of it all, i will probably have to have an emergency hysterectomy after giving birth.:(

Hi Aprilstar,

It's not fair, is it? I really really wish you all the best in conceiving # 2. I know what it's like to want a brother or sister for your child, but not being sure you can ever achieve it.

I pray you will conceive a lovely healthy bub and have a trouble free pregnancy - I wish that for us all! :D

Thanks so very much Brownbug! *Hugs* I wish you all the very best!

What a lovely person!

Hi Cooper / All,

I have "presumed (diagnosed from an ultrasound)" Adenomyosis, and tried Mirena. I had bleeding for 8 weeks, and extremely bad mood swings until I had it taken out, although I have heard many success stroies so I hope it works for you.

I am now back on the HRT Provera (which I was prescribed prior to the Adenomyosis diagnosis), which is awesome (no periods, no pain, not a single other symptom, yay!). Slight downfall with reduced bone density but this has increased since taking a lower dosage of Provera, and taking vit d and calcium tabs.

I am with you on the hysterectomy, not sure if i want kids for some time, but i certainly dont want the chioce taken away completely at 28!

Hope all goes well with you

Cheers

Hi Ladies
I am going in for an MRI to see if I have Adenomyosis. I have 1 child and had a myomectomy for fibroids, and a C section with my daughter, who is almost 5. We now want another baby and have been ttcing for 1 year with no success. I also have fluid in my tubes and I want to know if Adenomyosis will hinder my chances of conceiving??? I can do IVF and will if we have to, but I wonder if having Adenomyosis interferes with fertility? Any clues? Thank you.

forgive me, but i haven't read every reply that came after this ..

i had a tubal ligation done in feb 2004, in feb 2006 i was diagnosed with Adenomyosis and was offered a hysterectomy on the spot. before i had my tubal i had zero AF issues, since my tubal i have every increasing pain and AF is heavy! i'd never had a heavy period before that. i was told i could have a DnC to "clean" me out and that should alleviate any pain until it grew back.
we toyed with the idea of IVF but i don't think i could cope with it not working, so we have decided we have enough kids :) i know at some stage, well before i'm 40, i will have my hysto and my pain will be a thing of the past, but still, my uterus is mine and i'm a little attached atm, so i'm not ready.

:hug:

hope you are going well

Hi USAMum - I was originally diagnosed with endometriosis, which destroyed one of my tubes. I had a couple of laparoscopies to "clean me out" then was advised to go on IVF if I wanted kids (hubby had some issues too). After my daughter was born, instead of endo pain reducing, it increased and I was diagnosed with adenomyosis. The specialist said that this would reduce my chances of my next IVF transfer "sticking" from 40% to around 20%, so obviously it does impact your fertility a bit. That being said, my next transfer was successful and I'm now 10 weeks pregnant, so far so good. :D

Hi Chubbycheeks - I know what you mean about being attached to your uterus. I'm happy with two kids, and don't want any more, so after this one is born, my specialist wants me to consider hysterectomy as an option, but I'm not sure how I feel about that....He also told me though that as adenomyosis is endometriosis embedded in the actual lining of my uterus, they can't remove it any other way - ie D & C, laparoscopy etc :cry:

Hope everyone is coping OK and not in too much pain :pray: - adenomyosis is really awful!!!

oh bug, i'm so pleased for you!!! i had no idea that adeno reduced IVF chances by that much, i'm pleased i've come full circle now and realised i'm happy with the 5 i've got, in a perfect world, 8 would be my magic number, i'll just have to get more chooks ;)

lately i've been thinking that for my 35th b'day, in 2.5yrs, i'll have my hysto. i'm currently a week and half from AF being due and already suffering the terrible pain of adeno AF for a few days now :( i get slight relief from about day4 of AF til around 2weeks before i'm due, so i get a whole week and a half a month, which is more than some ladies get :(

i know this will sound morbid, but i am kind of glad to have stumbled across this thread, i don't know anyone else irl who has this and it's not a commonly known thing.

:hugs: for everyone

Hi everyone .. hope you are all well.

Thought I would stop by to tell you all that after 2yrs of ttc#2 we are finally pregnant!!!
We are 8wks so far, being closely watched by my FS, we've already had 2 scans, going for a 3rd in
2wks ... but for right now, babies heart beat is strong and everything is looking great at this point in time. I've had ppl tell me "see I told you if you relaxed it would happen" .... I just brush it off, they aren't to know to the full extent in which hubby and I have gone too in order to even fall pregnant again. It's far from easy and relaxing doesn't make miracles happen (in my case anyway).
I hope everyone is doing well and goodluck to you all.
Talk soon.
April.

Oh congratulations Aprilstar, so very happy for you and your DH!!!

I hope you have a lovely, happy and healthy pregnancy!! It sounds like your FS is taking wonderful care of you, which is so great!!!

:happyforyou::happyforyou::happyforyou:

Thanks so much Brownbug. I really appreciate your happy thoughts and well wishes for hubby and i.:hug:

that's wonderful news aprilstar :hugs:

aprilstar - congratulations on your pregnancy - hope all is going well.

I am glad we started this thread about adeno also...what is frustrating for me is that I am not really sure I have it. I have had some endo removed in about 15 months ago, and that is when the doc suggested there may be some adeno also.
I have hardly any pain whatsoever - i used to years ago but not now.

I have an appointment with the FS very soon - shall I ask for a Ultra sound or whatever it is that may get me a diagnosis?

I am getting so depressed because of knowing WHY we are not conceiving number 2 (our son was so easy to concieve!). ON our first IVF cycle last year we got 7 lovely embryos, all top grade but NONE took.

we have now had a break - still no luck and time is not on my side (I am 38).

I have just been diagnosed with possible adenomyosis after years & years of endo & surgery.......& now I've managed to stop crying, I'm not sure what to do in terms of treatment. (If I felt healthier, I would start with a whirlwind trip to the gym to blow off this extreme frustration) Cooper - if you're out there anywhere - what's the Mirena like? If my ultrasound points to adeno, it's either that or a hysterectomy....neither of which is even slightly attractive. Over the past 14 years, I've had 4 surgical interventions - 3 laparoscopies & a laparotomy for monster fibroids, and a course of Synarel. And a successful pregnancy, so I have a beautiful son. All of these offer the most fantastic, blissful, exciting relief, and I seem to get my life back - and have a taste of what being healthy & energetic feels like, & then it's gone again.
Anyone with experiences of Mirena, I'd love to hear from.........

Hi,

I just discovered this thread.
We have been TTC number 3 sicne I miscarried twins in Feb 2006 (at 9 weeks). We have a pigeon pair, but that's not my number.
I have had lapo,D&C two weeks ago and we are going for IVF next week.

I am desparate now, we are giving it one more year before a hystorectomy.
Little annoyed at myself that I didn't push with gyno more after last miscarriage - he told me to take a 6 month break, and lose weight. I did both and I am now scared that I won't get pregnant.

I had it and have gone on to have 2 beautiful little boys although after years of TTC and fertility treatment. I will eventually need a hysterectomy but after Ive finished having my kids. I plan on using the Mirena after I have final bub next year.

Glad i am not the only one out there with Adeno..i havent met anyone IRL...

I had the Mirena put in in December and had spotting and severe pain/cramping every couple of days up until the last few weeks...i was tossing up whether to get it taken back out as everyone said it should have settled down in 3 months...but i persisted because i didnt want the heavy long periods i was having previously...
So for the last few weeks everything has been good :)

This is very old posts I know, but I have just been researching this for a woman who has this and is pg with #4. SHe took uterine tonics for fall pg the last time as she kept losing the babies.
I was reading that Tubal ligation, c/s and DnC's all increase the chances of Adenomyosis. I was interested to know how many of you had undergone any of those procedures? A few of the last posts had and it got me wondering. I have a special interest in these things so any of your stories would be great! All the best with your journey's.
Cheers,

I had not had any of those procedures when it was diagnosed Philippa...have since had a DnC

Phillipa - Ive had 2 d/c's and 2 lapo's. No c/s and no tubals.

Had a routine u/s check on Monday and my endo is G-O-N-E. Never thought Id ever hear that. So hopefully its the end of my troubles and I might get to keep my uterus after all.

I'm going crazy with this whole adenomyosis thing, my doctor sputtered out about 4 different words last year when he diagnosed me. He used metaplasia with hyperplasia with adenomyosis causing polyps. I know what all of those words mean alone but together it sounds like a mess. I'm just reading through the stuff you all posted and some of what I have heard had been different. That during pregnancy the adenomyosis does stop but as soon as the pregnancy is over it gets worse. I've heard that gonadotropins can help, but nothing has helped me. In fact my doctor thought I was lying about all of my problems, so I got a new doctor and he diagnosed me. I have three children, I am young, I don't want anymore, does any one know anything about the prevalence of adenomyosis and uterine cancer? All of the women, with the exception of my aunt, have had hysterectomies due to cancer. Is this a precancerous condition? After my last d and c I haven't gone back to see my dr. I should but I'm so sick of it. Also, what are your menses like? Mine is 2 weeks of bleeding, so heavy I go through two boxes of tampons and some pads with severe cramping and pms, then two weeks off. Please any information would be appreciated.

Hi girls,

I am very glad that I found this forum as I thought I was alone. I live in London and was diagnosed with adeno, in 2006 at the age of 23 (I am not 25), I don't have any kids and I was suffering for years and getting ignored by doctors. After moving away from home for uni. I was finailly diganosed with fibroids but after opening me up to do a mayometomy, they found Adeno. all this in my final year of uni. I thought it would all be over after the op but that did not happen.

All I think about is having a baby but I am not in the position to:( and I have nightmares for not being told I am unable to and havingg children is the one thing i long for.

I hope everyday that God will give me the baby I want, me and my partner have been trying for8 months now with no luck and I am beginning to get scared.

Hi BabyGirl
I too was diagnosed at an EXTREMELY young age. I was only 21. I am now 35 and have been in the past trying to concieve. I am just about to undertake IVF as this seems to be my last remaining hope.

I will keep my fingers crossed for you that this will be a short journey for you and that you get what you desire.

Julz

Oh thank goodness for you guys!!!

I have just been diagnosed with adenomyosis, I had been refered to the Recurrent Miscarriage Clinic at the Women's as we have had 6 miscarriages in the space of 18 months, i have PCOS and my mum has Lupus, i thought it would have something to do with me having Lupus also (which i dont) however through an ultrasound they diagnosed Adenomyosis and the doctor there said it will NOT effect fertility and is NOT the cause of the losses, well i am no expert but i have been blessed with 4 children, all c-sections and had no problems in conceiving, my youngest is nearly 3 and to have all these losses since him, i would say that it has lots and lots to do with fertility and the ability to keep a pregnancy, i spoke to my f/s about it and he confirmed that it is nearly impossible to get pregnant naturally when you have adenomyosis as it is much harder to get rid of, due to where it is, and the only way to relieve pain is with a hysterectomy which is not an option at the moment. I am currently doing my 2nd round of IVF, and he has put me on cortisone, antiboitics and asprin to help me get pregnant and keep a pregnancy, so fingers crossed this time round we will be blessed :) i think that not enough is known about this condition, it is a very horrible thing to have, i am in constant pain which i thought was the PCOS, but i think personally that the Adenomyosis is much worse to handle rather than the PCOS, and that is bad enough to bare! If i am not on the pill i will bleed for over 120 days on end, become anemic and the pain is just really really too hard to handle, when i am on the pill, even when i reach the sugar tablets i will not bleed at all, and this could go on for another 120 or so days until i take something to bring on the bleeding, its just a rollercoaster ride, emotionally and physically and like others IRL no one seems to understand it, which sometimes does my head in cause i start to think that maybe its just me, maybe i dont really feel this way - but i can assure you the pain is all very real!

Hi all,

I was recently (4 months ago) diagnosed with adenomyosis and my gynaecologist prescribed the contraceptive pill (brand called yasmin) and the IUD called merina. I am now into my third cycle of taking the pill but it hasn't stopped the pain or heavy bleeding, in fact I feel slightly worse off as I now have a more regular cycle (28 days) as opposed to pre pill of a six week cycle. Reading your stories was so comforting to know I'm not alone. I realise a number of you are trying to fall pregnant so the pill is obviously not your solution. I have had fertility problems for the last fifteen years (am now 40) experiencing 3 miscarriages on the way. I have been diagnosed with a bicornuate uterus, broad uterus and PCOS (yes I won the lottery). Not being able to conceive my husband and I adopted our two beautiful children last April from Cambodia. For those of you not able to conceive do consider adoption, I feel blessed every day to have these two wonderful children living with us.....As for the adeno, my gynacaeologist believes the combination of the pill and IUD should help this condition. (Brownbug ask your physician about this before the hysterectomy). I was reluctant to have the IUD not feeling comfortable with something being inserted in my body, however the pill is not enough on its own. This condition is so debilitating that somedays during the worst of my pain I wish I could just rip out my uterus but deep down I'm not ready for the hysterectomy. I realise now I will have to have this IUD inserted and see how the combination of the two helps me.

Thinking of you all.

Jen

Hi Jensa,

I too was diagnosed recently with adenomyosis, I'm 24yo but not planning for children just yet. I also have endo but most of this has been cut out.

I am on the pill (Brevinor) plus another contraceptive (Primolut N) daily and constantly, ie no sugar pills and no periods at all. There is daily pain which varies but it is usually only minor. I still get serious pain if i do bleed, which only happens if I miss a pill.

I will have a mirena inserted in november to try to control the adeno a bit better.

Maybe taking an active pill constantly may would help you too? I don't have PCOS so I'm not sure what affect this would have but maybe worth asking your gyno. It is nice to not have that horrible pain associated with bleeds.

I hope this helps, good luck :)

Dear Desist,

Thanks for the reply and letting me know you still get a little pain and occasional bleed, I feel it is then normal for me to expect this too. I'm off to see my local GP next week and she may send me off to the gynae as well. Let me know how you go with the mirena?

All the best Jen